Today is one year from the date of my transplant. I feel a sense of peace writing that, living it, believing it.
I'm living at home, by myself again. I'm working. I'm travelling and planning. I'm doing things to my house. Sewing. Seeing friends, eating out, cooking in. All wonderful things.
The liver biopsy today was predictable with no complications. It was an interesting morning though. I spent a full two hours going from one part of the hospital to another doing the preparatory things. My letter with instructions to not eat after midnight and show up at 7:15 said to go to radiology first then admitting. Radiology said go to admitting first. Radiology did a sonogram of my liver and marked the spot between my ribs to stick the needle. The radiologist was a pleasant fellow who said my liver looked pretty good.
Then to the GI clinic, but back to the lab. A very young fellow was learning his way around the lab and I discovered he is a recent graduate of K-State when my arm bled and threatened to soil my purple sweatshirt. Likewise his mentor was a wildcat. A refreshing twist in a very blue and red hospital.
Finally to the GI clinic. Dr. Gilroy, who is Australian, had me sign the consent form and we chatted a bit. I told him Dr. Abhyankar said he always calls him "matey" on the phone. Dr. Gilroy replied "these guys confuse me with a sailor. I call him MATE." I must report that he is as good at the liver biopsy as he said he was. I was given sedation that put me to sleep after I was on the way back to the recovery room. It was over that fast. I contributed blood and tissue to a study. The nurse working on the study collection said they had only about 15 patients like me so it would be a real help to have my contribution. I was so willing...they have no idea how willing I am to help. The actual biopsy is done with a long hollow needle he inserts into my liver and removes a very small cylinder of tissue.
Fifteen patients "like me" is a clue about my situation as a transplant patient at KU. The nurses tell me things like "if there was a prize for the most weird treatments you would get it." And report the times the doctors sent me to the hospital from the clinic and did not feel good about it. We were all holding our breath about this last transplant. So many things were up in the air. I could not have a full transplant because my lungs were fragile and my liver was inflamed. I could not have an unrelated donor transplant because of the lungs. All the things the doctors had planned to do to make the second transplant work, they could not do.
But as I said last night, they are nothing if not creative. I received a different chemo as part of the mini-transplant. It was horrid but it worked. And they poured every single stem cell they got from Walt into me instead of just the amount called for according to my weight.
It was a very long haul, and very difficult. The few days I expected to be in the hospital turned into 7 weeks. I didn't eat for much of that time. The lungs were up and down. The acute graft v. host was extreme. (Acute refers to gvhd symptoms in the first 3 months after the transplant.)
Ah, but here I am a year later. Thriving.
I am glad to have the liver biopsy out of the way.
Walt came over tonight and brought me a blooming potted plant. I'm thrilled to have something blooming for my house. I feel pretty good and expect to go home tomorrow after spending the night with Mom & Dad.
Conor and Annie will be Oklahoma the next few days showing off their babies. I will miss that opportunity to see them, but this biopsy was already postponed from an appointment during my May trip to Chicago. I will see them soon.
Thanks to all of you who read the blog. To those of you who comment and those of you who don't. The blog is good for me. I think when I post regularly, I don't struggle with the blues. The blog is not going away. There might be more daily trivia included but this recovery is still a work in progress so I will continue to update. If you have an opinion, I welcome it. Here or via email.
My canoe is steady in mid-stream heading down river. I'm thinking of things like sun defense and balance so this tells me I'm getting better. The visual world in my head is broadening.
~Cathi
Tuesday, June 29, 2010
Monday, June 28, 2010
1 year minus 1 day
Tomorrow will be one year from my transplant. It will also be my liver biopsy so I may not be able to post. I also may not be able to eat much so I went out and celebrated today. I bought 2 new charms for my bracelet: a 4 leaf clover and a World Health charm. I think that about sums it up, good health and good luck. Mom & Dad and I went out and ate steaks and enjoyed a glass of wine. Topped off by DQ Blizzards for me and Dad. (Really we're rednecks! Who else goes from a fine steakhouse to the Dairy Queen?) Here's a picture that is kind of dark, but still good. I will remark here how lucky I am to have had such attentive, careful and loving caregivers.
The last couple of weeks have been up and down which I think is what you call normal. I have been feeling very rebellious about the pills. I am really sick and tired of the pills. I actually threw them in the trash one night. It's difficult to swallow. There are a dozen or so to take. 4 are enormous and 2 more are awkward. (I know...some cheese to go with that whine?) Anyway about 3 days of skipping pills and I started having pains I hadn't had in a long while. That is some incentive to get back on the pill regimen. I dread it every time. I procrastinate. I take them in the morning last thing before I leave the house. I take them at night last thing before I go to bed. In the meantime, I fret about it while I'm procrastinating. I think I could write a sitcom. Or at least a few short pages of a neurotic performance. One time a pill stuck in my throat and I could not get it down. My mouth began to taste like old fish. I think this is the folic acid pill to make my feet tingle less. Which it does, but I really hate the taste of old fish. Ah well. It's not likely to change for a while. And I sure don't have much trouble taking a pain pill or a sleeping pill. So it's as much neurology as physiology.
The last couple of weeks have been up and down which I think is what you call normal. I have been feeling very rebellious about the pills. I am really sick and tired of the pills. I actually threw them in the trash one night. It's difficult to swallow. There are a dozen or so to take. 4 are enormous and 2 more are awkward. (I know...some cheese to go with that whine?) Anyway about 3 days of skipping pills and I started having pains I hadn't had in a long while. That is some incentive to get back on the pill regimen. I dread it every time. I procrastinate. I take them in the morning last thing before I leave the house. I take them at night last thing before I go to bed. In the meantime, I fret about it while I'm procrastinating. I think I could write a sitcom. Or at least a few short pages of a neurotic performance. One time a pill stuck in my throat and I could not get it down. My mouth began to taste like old fish. I think this is the folic acid pill to make my feet tingle less. Which it does, but I really hate the taste of old fish. Ah well. It's not likely to change for a while. And I sure don't have much trouble taking a pain pill or a sleeping pill. So it's as much neurology as physiology.
Other notes about the current state of my body. My nails are all breaking off, but still growing as if they've been fertilized. I need a pedicure every 3 weeks instead of every 6. I need a pedicure because I cannot comfortably reach my toes to do a number on them. In fact putting my socks on in the morning is an acrobatic performance. Perhaps not as ridiculous looking as attempting to get my britches off at night, but all amusing. I think the effects of the cortizone cream must be cumulative because my skin stops hurting and being very sensitive so I stop using the cream. Pretty soon, it hurts again. A fellow survivor told me that she wraps up in cling wrap at night, or has her husband wrap her. Slather with cortizone cream and wind up the cling wrap. The mere thought of wrapping myself makes me cringe with pain, but I may spend a few nights at Mom & Dad's to try this bit of therapy.
I have mild sores in my mouth which is a little bit dry. Inside each cheek I have very prominent ridges representing graft v. host. I keep a bottle of salt water by the sink and every time I wash my hands I rinse my mouth. This helps. Some things don't taste good like they did before I got sick. Wine and scotch for example. Other things that I wasn't crazy about really hit the spot, such as wheat beer. I think the mouth problems are related to the pills because during my rebellion things began to taste really good. And the dryness was less noticeable. Mere procrastination does not bring on this bit of relief; it must be a full fledged rebellion.
Mark came to visit for a weekend and put up shelves for me. I now have a mantel on my fireplace. I live in a split level house built in 1967 when "The Den" was king. The really nice houses had a den with wood paneling, rough hewn
ceiling beams and a big brick fireplace hulking over it all. Cozy I think was the word. The fireplace in my house, moreover, was placed square with the front door which blows any hope of symmetry in the room it illuminates. A couple of years ago Mark tore out the bricks and we put up wallboard and sconces and installed an electric fire. I love the electric fire--two punches on the remote and I have fire and heat. One more punch equals more heat. It looks real enough that people come in the front door and worry about the embers burning. Just after I got sick in 2008 my niece and her husband tiled the surround and now I have a mantel. Herewith the before and after for your viewing pleasure. Other home improvement tasks include replacing a light fixture by myself standing on a short ladder with my hands and arms up over my head. Take that lady physical therapist!
Mark came to visit for a weekend and put up shelves for me. I now have a mantel on my fireplace. I live in a split level house built in 1967 when "The Den" was king. The really nice houses had a den with wood paneling, rough hewn
ceiling beams and a big brick fireplace hulking over it all. Cozy I think was the word. The fireplace in my house, moreover, was placed square with the front door which blows any hope of symmetry in the room it illuminates. A couple of years ago Mark tore out the bricks and we put up wallboard and sconces and installed an electric fire. I love the electric fire--two punches on the remote and I have fire and heat. One more punch equals more heat. It looks real enough that people come in the front door and worry about the embers burning. Just after I got sick in 2008 my niece and her husband tiled the surround and now I have a mantel. Herewith the before and after for your viewing pleasure. Other home improvement tasks include replacing a light fixture by myself standing on a short ladder with my hands and arms up over my head. Take that lady physical therapist!
I continue to see friends and work. I work at least two hours every day. They are not all billable but they are productive. I am sharpening my mind, honing my troubleshooting skills and I am happy, well thrilled, that messing about with computers still charges my battery. I have a couple new customers, very small, but it gets the juices running and that's what I want. I look forward to being able to make a living again. Work long hours and late ones when called for.
Friday I went to eat Indian for the first time since I got well. I used to love a good curry but it did not hit the spot Friday. I switched to less spicy foods for lunch, but the damage was done. My belly suffered and my weekend social plans all went down the tube. Or perhaps I caught a mild bug somewhere even though I've had every kind of flu shot and immunization known to my doctors.
I saw Dr. Aljitawi last week. My counts are good though the platelets continue to drop. As with the other providers he wasn't worried about this. (The guy doing the liver biopsy tomorrow might worry but that remains to be seen.) Aljitawi said that if the liver biopsy shows what they expect, that the problem in my liver is caused by too much iron from too many transfusions, then I will start giving blood. Every two weeks or so they will drain a unit of blood until the iron returns to an acceptable level. I assume this will also drop my hemoglobin so I'm curious to see how long my body takes to rebuild those hemoglobin levels. My ferritin level was 3793 a month or so ago, and normal is 10-200. The human body simply cannot process the abundance of iron that comes with many, many transfusions. The iron builds up in the liver and causes problems. Without action, the iron does not return to normal levels. It requires intervention to reduce the count.
I listen to providers talk about options and next steps and I am struck by how fortunate I am to have this team of doctors and nurses who are creative and responsive. What an interesting field to be working in! I remember when I was in the hospital in February, 2009 with pneumonia and just could not catch a break. Dr. Abhyankar came in one day and said "we're running out of things to try." The next day Dr. McGuirk came in and the team had had a meeting and tossed about ideas and one stood out. They called other transplant centers who agreed it was worth a try and it worked! My poor old marrow began coughing up enough white cells to beat up the pneumonia and get me out of the hospital.
So it is a process of action and reaction. We are reaching the point in my recovery where we can be a little bit proactive, but most steps are still based on today's test results. Next Tuesday, July 6th, I have the "1 year workup." This consists of a pulmonary function test, drawing about a quart of blood (well it's 30 tubes or so,) and a bone marrow biopsy. I have an appointment to get the results on July 19th. I am still visiting the clinic every 2 weeks and Dr. Aljitawi mentioned extending it to 3 weeks, but he didn't do it. As a side note, there is a new phlebotomist at the clinic. His name is Carlos and he kneels to take my blood. I love him because he is the most painless sticker I've known. Or perhaps because he is adorable and kneeling before me.
Step by step. Lots of gratitude. Lots of wonder. and last but not least, lots of fun!
Friday I went to eat Indian for the first time since I got well. I used to love a good curry but it did not hit the spot Friday. I switched to less spicy foods for lunch, but the damage was done. My belly suffered and my weekend social plans all went down the tube. Or perhaps I caught a mild bug somewhere even though I've had every kind of flu shot and immunization known to my doctors.
I saw Dr. Aljitawi last week. My counts are good though the platelets continue to drop. As with the other providers he wasn't worried about this. (The guy doing the liver biopsy tomorrow might worry but that remains to be seen.) Aljitawi said that if the liver biopsy shows what they expect, that the problem in my liver is caused by too much iron from too many transfusions, then I will start giving blood. Every two weeks or so they will drain a unit of blood until the iron returns to an acceptable level. I assume this will also drop my hemoglobin so I'm curious to see how long my body takes to rebuild those hemoglobin levels. My ferritin level was 3793 a month or so ago, and normal is 10-200. The human body simply cannot process the abundance of iron that comes with many, many transfusions. The iron builds up in the liver and causes problems. Without action, the iron does not return to normal levels. It requires intervention to reduce the count.
I listen to providers talk about options and next steps and I am struck by how fortunate I am to have this team of doctors and nurses who are creative and responsive. What an interesting field to be working in! I remember when I was in the hospital in February, 2009 with pneumonia and just could not catch a break. Dr. Abhyankar came in one day and said "we're running out of things to try." The next day Dr. McGuirk came in and the team had had a meeting and tossed about ideas and one stood out. They called other transplant centers who agreed it was worth a try and it worked! My poor old marrow began coughing up enough white cells to beat up the pneumonia and get me out of the hospital.
So it is a process of action and reaction. We are reaching the point in my recovery where we can be a little bit proactive, but most steps are still based on today's test results. Next Tuesday, July 6th, I have the "1 year workup." This consists of a pulmonary function test, drawing about a quart of blood (well it's 30 tubes or so,) and a bone marrow biopsy. I have an appointment to get the results on July 19th. I am still visiting the clinic every 2 weeks and Dr. Aljitawi mentioned extending it to 3 weeks, but he didn't do it. As a side note, there is a new phlebotomist at the clinic. His name is Carlos and he kneels to take my blood. I love him because he is the most painless sticker I've known. Or perhaps because he is adorable and kneeling before me.
Step by step. Lots of gratitude. Lots of wonder. and last but not least, lots of fun!
~Cathi
Thursday, June 10, 2010
Back to Gilwell
Last Sunday I had dinner with my Wood Badge Patrol. The Owl patrol from C34-04. Six of the seven of us were able to get together. We have stayed in touch and gathered for dinner periodically. They all sent encouraging messages, called or visited while I was sick. The fireman, Steve, visited a couple of times in ICU. His first visit is one of the few things I remember from that time frame. I don't remember the second visit at all.
Anyway here we are. All checking in. Who is doing what in scouts? How is your troop, crew, pack? When are you going to camp and where? New district positions? Kids getting married? graduating from college? Life goes on. From left to right: John, Chris, Mark, AJ, me, Steve. Another Mark wasn't able to be there.
Wood Badge is advanced adult leader training for boy scouts. Participants in the course are divided into patrols like a large troop and the camp is named "Gilwell." Gillwell is the first boy scout camp in the world, located in England near Chingford, a short train ride from London. A friend gave it to Lord Baden-Powell and it is still used as a camp today. I have visited there several times. Ironically, I've never been to Baden-Powell's house that is right in London. Anyway, "Back to Gilwell" is the camp song, a simple ditty with clapping and hand movements that will drive you nuts. Unless of course, you're a wood badger.
I went to yoga today. It felt wonderful. I have not had a bad day this week. I am really working with my shoulders, arms and fingers, to get more flexibility in them. My hips and legs seem to be pretty good. Of course they could use a little more stretch, but my arms and hands need to get to zero. I have lost ground with them. I missed PT tuesday because I couldn't find a parking place. 20 minutes in the parking garage is 12 minutes more than I allow and there weren't any spots to be found. I was in a queue of about 12 cars who drove in and drove out.
In any case I have decided to not go to PT for a while and work with the yoga. Add a couple more classes and do some serious work here at home. I have the exercises and equipment from the PT department so I know what to do. And this way they won't have to think of new things for me.
I saw Dr. Ganguly at the clinic today. He is happy with my counts even though the platelets have dropped to 108. I have to pause and laugh. I'm fretting about 108. For 18 months my platelets were in the 6-15 range.
He says the drop is caused by graft vs. host. I am anxious for my hg to reach "normal," that is 12.0, but it stubbornly stays in the 11s.
I asked him about this graft vs. host. GVHD. What's the big picture here? Julie focused on the skin, Dr. Abhyankar on the inflammation, Abby on the pain. I need a big picture. So the big picture is: this is good. They would describe my symptoms as limited. Some thickening of the skin, some inflammation, some restricted movement. People who have limited GVHD don't get the disease again. (For this I am grateful.)
I have scar tissue everywhere. In my joints, in my organs, everywhere. I asked him if I should treat it like arthritis? He nodded. I said rheumatoid arthritis, he made a face and said "no, no, no, no. Old lady arthritis." ha ha. It will last for the forseeable future. Can it kill me? "NO." That was a good answer.
Things to do include all that I am doing. Cortizone cream, Aleve, Tylenol, Cellcept. Cellcept is an immune suppressant and I guess by suppressing the immune system it stifles the scar tissue factory or something. In any case I will keep taking it for a while.
Then they might order photo-apheresis. During this procedure my blood circulates through irradiation that "numbs" it (Ganguly's word.) This makes it settle down and quit making scar tissue. "Simmer down..." The photo-apheresis involves inserting a port in my chest that is under my skin. The procedure happens twice a week for several weeks, then gradually tapers off over a 6 month period. I'm hoping it is 10 days between treatments by the time I go to Italy. Or that the team does not order it for me.
Whether or not we do it depends on how much flexibility I can regain in my shoulders, wrists and fingers over the next month or so. Paraffin dips, stretches, pullies, spa baths. Lotsa energy going into this.
Meanwhile stay busy is my mantra. Housekeeping, working, errands. There is always something to do. The more active I am the better I feel. I am still catching up with friends I haven't seen since I was sick.
~Cathi
Anyway here we are. All checking in. Who is doing what in scouts? How is your troop, crew, pack? When are you going to camp and where? New district positions? Kids getting married? graduating from college? Life goes on. From left to right: John, Chris, Mark, AJ, me, Steve. Another Mark wasn't able to be there.
Wood Badge is advanced adult leader training for boy scouts. Participants in the course are divided into patrols like a large troop and the camp is named "Gilwell." Gillwell is the first boy scout camp in the world, located in England near Chingford, a short train ride from London. A friend gave it to Lord Baden-Powell and it is still used as a camp today. I have visited there several times. Ironically, I've never been to Baden-Powell's house that is right in London. Anyway, "Back to Gilwell" is the camp song, a simple ditty with clapping and hand movements that will drive you nuts. Unless of course, you're a wood badger.
I went to yoga today. It felt wonderful. I have not had a bad day this week. I am really working with my shoulders, arms and fingers, to get more flexibility in them. My hips and legs seem to be pretty good. Of course they could use a little more stretch, but my arms and hands need to get to zero. I have lost ground with them. I missed PT tuesday because I couldn't find a parking place. 20 minutes in the parking garage is 12 minutes more than I allow and there weren't any spots to be found. I was in a queue of about 12 cars who drove in and drove out.
In any case I have decided to not go to PT for a while and work with the yoga. Add a couple more classes and do some serious work here at home. I have the exercises and equipment from the PT department so I know what to do. And this way they won't have to think of new things for me.
I saw Dr. Ganguly at the clinic today. He is happy with my counts even though the platelets have dropped to 108. I have to pause and laugh. I'm fretting about 108. For 18 months my platelets were in the 6-15 range.
He says the drop is caused by graft vs. host. I am anxious for my hg to reach "normal," that is 12.0, but it stubbornly stays in the 11s.
I asked him about this graft vs. host. GVHD. What's the big picture here? Julie focused on the skin, Dr. Abhyankar on the inflammation, Abby on the pain. I need a big picture. So the big picture is: this is good. They would describe my symptoms as limited. Some thickening of the skin, some inflammation, some restricted movement. People who have limited GVHD don't get the disease again. (For this I am grateful.)
I have scar tissue everywhere. In my joints, in my organs, everywhere. I asked him if I should treat it like arthritis? He nodded. I said rheumatoid arthritis, he made a face and said "no, no, no, no. Old lady arthritis." ha ha. It will last for the forseeable future. Can it kill me? "NO." That was a good answer.
Things to do include all that I am doing. Cortizone cream, Aleve, Tylenol, Cellcept. Cellcept is an immune suppressant and I guess by suppressing the immune system it stifles the scar tissue factory or something. In any case I will keep taking it for a while.
Then they might order photo-apheresis. During this procedure my blood circulates through irradiation that "numbs" it (Ganguly's word.) This makes it settle down and quit making scar tissue. "Simmer down..." The photo-apheresis involves inserting a port in my chest that is under my skin. The procedure happens twice a week for several weeks, then gradually tapers off over a 6 month period. I'm hoping it is 10 days between treatments by the time I go to Italy. Or that the team does not order it for me.
Whether or not we do it depends on how much flexibility I can regain in my shoulders, wrists and fingers over the next month or so. Paraffin dips, stretches, pullies, spa baths. Lotsa energy going into this.
Meanwhile stay busy is my mantra. Housekeeping, working, errands. There is always something to do. The more active I am the better I feel. I am still catching up with friends I haven't seen since I was sick.
~Cathi
Saturday, June 5, 2010
Travel Tales
I have put off posting because I wanted to put up pictures and because every time I get ready to post something else happens. I'm feeling pretty good overall and getting my mojo back after a beating from the physical therapist.
I went to Washington DC for a wedding and to visit my cousin Nancy. I had a fantastic trip. The day of the wedding, in old town Alexandria at George Washington's River Farm was perfect in every way. For me it was a pain free day. I wore my dress shoes for hours and even danced. I danced as much as I wanted. I drank alcohol. As much as I wanted, which wasn't very much actually. The wedding was relatively small, permitting conversation with
just about everyone there which was wonderful. I had a gem of a conversation with a woman whose husband has had serious illness over the past 18 months but he was there, walking with a cane. We talked about the experience of dropping out of one's life suddenly, the fears, and how this kind of illness changes you. That little chat made the experience of the wedding even more precious.
Here's a pic of old friends who worked together at the Polsinelli law firm. Sally, on the far right, is the mother of the groom.
Nancy, a most wonderful host, collected me at the airport and we went directly to a salon for pedicures. After the wedding we had massages. Sunday we walked up to the capitol for the concert. Monday we went to a barbq and ate crabs. It's crab season back there an
d I had a lot of fun cracking them and eating them. A barbaric ritual that would have turned my doctors inside out had I tried to do it while my counts were still recovering. We visited the FDR Memorial which I had not seen and I liked it. This photo is in the 3rd term section, the war years. There are granite slabs every which way, both inside and outside the fountain. Very evocative of the disrupted countryside from bombs. Aside from these little adventures, we had fun walking the dog, walking to dinner, chatting. I'm a big fan of her beau who brought the Washington Post over to read every day.
On the way home as I was boarding the airplane the fellow in front of me dropped his sunglasses. Yours truly was able to bend down and pick them up and hand them back to him. Woo hoo! That is a lot of progress. Bending down to pick something up sometimes hurts so much that I don't bother. I really felt on top of the world as I made the trip home. Optimistic and confident and ready to do battle with my body.
I worked several hours each Wednesday and Thursday, then went to physical therapy Thursday afternoon. Thursday was not a good day. Everything hurt and nothing was moving very well. The PT insisted that we measure that day. I told her it was not a good day to measure because I was so sore and that tomorrow would be better. I guess she didn't believe me. She was mad because I hadn't been in for 3 weeks. And of course she was mad because the flexion (her term) in my arms and wrists was worse than when I started. She refused to count my last visit when we discovered that my shoulders were 30 degrees more flexible. She just wanted to be mean I guess. She must have been having a bad day too.
Anyway, that totally took the piss out of me. That the measurements were bad. That she didn't believe me when I said it was just a bad day. I cried and cried and cried. I fumed. I threatened to cancel the rest of the PT appointments. When I first went in there, she didn't understand GVHD and didn't understand what I explained to her. Now she has another patient so she's an expert. Said patient is making wonderful progress so obviously I am not doing my work at home. I know the other patient. I know her symptoms are about half what mine are. And I don't think the PT is now an expert.
She is a gov't employee, floating her gravy boat to retirement. She doesn't care about the individual, just her own numbers. Pfffft. I didn't cancel the appointments because the next two are with a different therapist. Nobody in there is very friendly, but maybe this one will be less overbearing. I had to think about where my canoe was. Beached. While I pouted. Took some mind work to get it back out in the stream.
Meanwhile yesterday was a good day. Today is a good day. I want to take my flat hand and smack that teutonic witch up the side of the head!
Mom had her last radiation on Thursday so we all met on the Plaza for lunch to celebrate. It is a wonderful feeling to beat cancer. To finish treatments.
I miss my friends at the clinic terribly but I am so happy being able to resume my life. The restaurant, Brio, was very accommodating and celebratory as well. Gave us complementary appetizer and then plates so we could eat BabyCakes for dessert.
When I returned home from Chicago I felt a little bit like when I used to travel for work. Get home, pay some bills, do the laundry, pack and leave again. My next door neighbor, Jack, has sent his grandson over to mow my yard twice. There is a special place for Jack in my heart. He is a champ. My neighbors across the street, Zach & Jen, have worked overtime collecting papers and mail for me. Mom & Dad have checked the post office box and made the bank deposits. All these things and I don't have dogs anymore!
I really missed Hayward Wednesday morning this week. It was raining hard when I got up. So hard that I just left the paper in the yard. HaHa. It's still not time for a dog or for gardening. My garden needs some serious work.
So there you go. My counts are holding steady. Hg was 11.8 a mere .4 away from normal, last week. The pain management is getting better. I have about one bad day a week, but I used to have about one good day a week so this is huge progress. I need to lose 5 pounds! gasp! Wally Time is over for me. I must pay attention to what I eat, and drink. Really, I don't drink alcohol much. Just occasionally.
We are scheduling the one year workup for July 6th because I have a liver biopsy scheduled for June 29th. THE DAY. One year from the date of my transplant. I'm thinking about a celebration.
~Cathi
I went to Washington DC for a wedding and to visit my cousin Nancy. I had a fantastic trip. The day of the wedding, in old town Alexandria at George Washington's River Farm was perfect in every way. For me it was a pain free day. I wore my dress shoes for hours and even danced. I danced as much as I wanted. I drank alcohol. As much as I wanted, which wasn't very much actually. The wedding was relatively small, permitting conversation with
just about everyone there which was wonderful. I had a gem of a conversation with a woman whose husband has had serious illness over the past 18 months but he was there, walking with a cane. We talked about the experience of dropping out of one's life suddenly, the fears, and how this kind of illness changes you. That little chat made the experience of the wedding even more precious.Here's a pic of old friends who worked together at the Polsinelli law firm. Sally, on the far right, is the mother of the groom.
Nancy, a most wonderful host, collected me at the airport and we went directly to a salon for pedicures. After the wedding we had massages. Sunday we walked up to the capitol for the concert. Monday we went to a barbq and ate crabs. It's crab season back there an
d I had a lot of fun cracking them and eating them. A barbaric ritual that would have turned my doctors inside out had I tried to do it while my counts were still recovering. We visited the FDR Memorial which I had not seen and I liked it. This photo is in the 3rd term section, the war years. There are granite slabs every which way, both inside and outside the fountain. Very evocative of the disrupted countryside from bombs. Aside from these little adventures, we had fun walking the dog, walking to dinner, chatting. I'm a big fan of her beau who brought the Washington Post over to read every day.On the way home as I was boarding the airplane the fellow in front of me dropped his sunglasses. Yours truly was able to bend down and pick them up and hand them back to him. Woo hoo! That is a lot of progress. Bending down to pick something up sometimes hurts so much that I don't bother. I really felt on top of the world as I made the trip home. Optimistic and confident and ready to do battle with my body.
I worked several hours each Wednesday and Thursday, then went to physical therapy Thursday afternoon. Thursday was not a good day. Everything hurt and nothing was moving very well. The PT insisted that we measure that day. I told her it was not a good day to measure because I was so sore and that tomorrow would be better. I guess she didn't believe me. She was mad because I hadn't been in for 3 weeks. And of course she was mad because the flexion (her term) in my arms and wrists was worse than when I started. She refused to count my last visit when we discovered that my shoulders were 30 degrees more flexible. She just wanted to be mean I guess. She must have been having a bad day too.
Anyway, that totally took the piss out of me. That the measurements were bad. That she didn't believe me when I said it was just a bad day. I cried and cried and cried. I fumed. I threatened to cancel the rest of the PT appointments. When I first went in there, she didn't understand GVHD and didn't understand what I explained to her. Now she has another patient so she's an expert. Said patient is making wonderful progress so obviously I am not doing my work at home. I know the other patient. I know her symptoms are about half what mine are. And I don't think the PT is now an expert.
She is a gov't employee, floating her gravy boat to retirement. She doesn't care about the individual, just her own numbers. Pfffft. I didn't cancel the appointments because the next two are with a different therapist. Nobody in there is very friendly, but maybe this one will be less overbearing. I had to think about where my canoe was. Beached. While I pouted. Took some mind work to get it back out in the stream.
Meanwhile yesterday was a good day. Today is a good day. I want to take my flat hand and smack that teutonic witch up the side of the head!
Mom had her last radiation on Thursday so we all met on the Plaza for lunch to celebrate. It is a wonderful feeling to beat cancer. To finish treatments.I miss my friends at the clinic terribly but I am so happy being able to resume my life. The restaurant, Brio, was very accommodating and celebratory as well. Gave us complementary appetizer and then plates so we could eat BabyCakes for dessert.
When I returned home from Chicago I felt a little bit like when I used to travel for work. Get home, pay some bills, do the laundry, pack and leave again. My next door neighbor, Jack, has sent his grandson over to mow my yard twice. There is a special place for Jack in my heart. He is a champ. My neighbors across the street, Zach & Jen, have worked overtime collecting papers and mail for me. Mom & Dad have checked the post office box and made the bank deposits. All these things and I don't have dogs anymore!
I really missed Hayward Wednesday morning this week. It was raining hard when I got up. So hard that I just left the paper in the yard. HaHa. It's still not time for a dog or for gardening. My garden needs some serious work.
So there you go. My counts are holding steady. Hg was 11.8 a mere .4 away from normal, last week. The pain management is getting better. I have about one bad day a week, but I used to have about one good day a week so this is huge progress. I need to lose 5 pounds! gasp! Wally Time is over for me. I must pay attention to what I eat, and drink. Really, I don't drink alcohol much. Just occasionally.
We are scheduling the one year workup for July 6th because I have a liver biopsy scheduled for June 29th. THE DAY. One year from the date of my transplant. I'm thinking about a celebration.
~Cathi
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